Stronger Than I Look

Gah. Where to start? All the celebrity death? Losing important members of my musical family – the musicians who babysat me during my formative years when I felt super weird in a ’round-hole-square-peg’ way. It turns out that I was not weird at all from the casual observer’s viewpoint, but the insecurities of my childhood led me to these musicians who were making the most of their weirdness and I wanted to “fit in” with that. Dancing around in my Days-of-the-Week underwear, which I never wore on the correct day – Tuesday could be worn on Friday without the Universe falling apart – to “TVC-15” by Bowie and knowing every lyric to “Queen Bitch” at an impressionable age. Wearing my mom’s wigs while belting out “All the Young Dudes” performed by Mott the Hoople (who recently lost their drummer, Dale Griffin) and was famous – mostly – for covering a David Bowie song. And Glenn Frey, who I didn’t love as a solo artist, but adored as an Eagle, and even had the privilege of having him and Joe Walsh sing Happy Birthday (to ME!) on my 24th birthday (my college BFF, Paula, can verify this claim.) So, I’m sad about those losses for sure, but understand that they will live on through my MP3 player, CD’s, vinyl, cassettes and 8-tracks. Yes, I still have some 8-tracks.

Since my last post so much has happened. I broke up with a minor family member after confronting him on some bullshit he said about me at a minor family gathering where I was not present. I have a LOT of steps and halves and related-by-marriage nonsense since my biological father has made it his mission in life to marry multiple women with a shit-load of kids. I liked this particular kid, no, I loved him. He was my favorite out of the whole lot. But he went on to explain that everyone was sick of hearing about my “cancer-kid” and that I should stop playing that card. After all, he had a co-worker who died from cancer so he knows EXACTLY what I’m going through.

Let that sink in for a minute.

Yeah. It hurt. A lot. I know people are sick of our situation, but none of you more than Ben. Trust me. I’m sure he’d much rather be a well child who hasn’t spent the last 12 years fighting a horrendous cancer, but this is the hand we’ve been dealt. While my heart hurt over what this relative said, I don’t feel a bit bad about permanently severing that relationship. He handed me the scissors. I made the cut. I have to take it for what it is and move forward. But it still hurt.

Speaking of always talking about cancer, Ben’s last scans showed no change. It’s good that it hasn’t grown or spread, but it’s bad that the tumors didn’t dissipate with chemo. We’ve been talking with Palliative Care to discuss horrible things like bucket lists and quality of life and making the most of every-single-minute. But trying to get Ben to tell us what he wants – what would make his life better – he has minimal thoughts on that. Or, I guess, he’s not sharing with us what he wants except that he wants to see a volcano. When pressed, he simply states, “I just want to spend time with you and dad and Midge,” (his nickname for Maddy.)

I have to applaud him. If I were asked about my bucket list, I’d be quick to rattle off things like seeing the Northern Lights from a glass igloo in Finland. Getting some work done on my turkey neck. Seeing a game in every NHL arena. Taking a craft beer tour of the US. Visiting the five states that I haven’t been to (AK, ND, ME, VT, NH.) Taking a yoga retreat in an exotic destination. Getting published. And then spending my waning days in an adjustable bed bingeing on Netflix and potato chips, while periodically peering into a mirror to admire my youthful neck, surrounded by the people I love.

But Ben isn’t a taker. He doesn’t want people to feel compelled to make his life better. Over the holidays, we were invited to a party for “There With Care,” a wonderful charity that has given us so much since we’ve lived in Denver. The party-goers were asked to bring a gift to donate to the myriad of affected families in Colorado. When we walked in to the event, there were literally tables overflowing with amazing gifts. Ben and Mad were told to choose any present they desired. I mean, there were brand new iPods! The 64-gig ones! So, when Ben chose a $25 gift card to Target and Madeline followed suit, my heart exploded. I marveled over the fact that I – a self-absorbed asshole who probably would have nicked the 64-gig iPod – have raised two of the most non-asshole-y kids in the Universe.  And for one of them to have to worry about getting an extension on life while the other is worried about losing her only sibling, well, they deserve to be a little bit of an asshole. Yet, they aren’t. And I’m proud of that.

I can’t imagine what goes through Ben’s quiet mind. We just passed the two-year anniversary of when his co-warrior, Justin, lost his battle. We’re currently waiting for any crumb of information about another Colorado-based Neuroblastoma warrior, Delaney, who is quickly nearing the end of her battle. I just can’t imagine this loss and pain and how it affects my son. I know how it affects me. I’m terrified. It breaks my heart that all I can do is pat Ben’s hand or give him a hug as the devastation continues to roll in, relentless as high tide. Platitudes aren’t life preservers. I know that for a fact.

But love is. The loss keeps coming but the love keeps us afloat. And we are so thankful to every single soul who takes a minute to think about us, or goes to the amazing extreme – like my sister – who gave the entirety of her family’s Christmas fund to us so we can take our Ben to see a volcano when we get a break in treatment. Beautiful gestures like that make it easier to let go of the hangers-on trying to make us feel icky. We feel enough of that without your help, thank-you-very-much. And from here on out, focusing on the love is an integral part of my mission.

So, I highly recommend you strip down to your underwear and dance to your favorite music, whether it be classic rock, country, or, heck, even Slim Whitman if that’s what you’re into. Anything will do. Invite the love in and let it soothe your soul. We all deserve that from time to time.

And if you get in trouble at work or arrested at the grocery store for public indecency, tell them it’s for Ben. If that doesn’t work, hopefully you read my jail-experience posts a couple of years ago. There are some helpful tips in there.

Sending so much love to all of you. So thankful for all that’s sent to us in return. ❤

 

 

 

 

*Directions* – please put on your humor glasses before reading. Some effects are in 3-D.

The past month of my life has sucked old man balls. No offense to old men and their dangly bits. Well, maybe just a little. Since men traditionally age so much better than women maybe I’m just angry that my face is showing its age so much more this holiday season – and men can always (and usually do) cover their testes with clothing. I needed to make a crack on them to make myself feel a tiny bit better.

Just follow along, friends. It’s for my mental health.

I won’t go through everything that’s bringing me down this holiday season, because, Hey. I care about you. I want you to have a happy season. (You’re welcome.) But the highlights include:

*one totaled Subaru named Suzanne – on Thanksgiving, no less. Oh, and this is after a long day of chemo for Ben, because, why not make my most despised holiday even shittier?

*one dead hamster named Liz Lemon, which added a whole lot of insult to the bullying injury my daughter was already facing. Sixth graders, man. Why adolescence has to happen at all will always remain a mystery to me. Add in a dead hamster and watch the emotional eruption cover your holiday season like hot ash covered Pompeii. They’ll unearth me someday, curled in a fetal position, sucking my thumb and holding a perfectly preserved fruitcake.

*three panic attacks that ended with me passing out, one in the comfort of my own kitchen, another outside of the house after an Avalanche game (we won… I’ll chalk the passing out to the AVS actually creaming an opponent this season) and the other in a very crowded IKEA. Check YouTube for “Middle-aged woman wearing yoga pants passes out while browsing ANGSSKARA duvet covers.” I’m sure it’s trending as I type. Everyone just assumed I was diabetic. Never have I had so many people trying to throw orange juice at me at once. It was like a citrus stoning. It ended without much excitement, I finished shopping and Matt is putting together the KELLAX shelving as I lay here recovering.

I’m sure I could compile all the nonsense that’s occurred this month and come up with my own twisted version of “The Twelve Days of Christmas.” If only I had the energy to write it….

The holiday season has always left a lot to be desired. I’m not sure if it was the drama of shuffling between broken homes or all the food that touches each other or watching step-siblings get awesome presents while your biological father tells you yours had been stolen out of his car, so there was nothing for you that year (I wish I were making that up for dramatic purposes. Don’t tell him I know the truth… he thinks I still believe his bullshit.) But it’s always left me with feelings of inadequacy, no matter what I’ve tried to do to release it. And, of course, once I had my own children I felt compelled to make it the Best. F*cking. Event. Ever. Overcompensate much? Sure. I’m guilty.

But this year will be different. It’s about the memories instead of the stuff. I don’t subscribe to any religion, so I guess some would say that I shouldn’t celebrate at all. Not that I don’t believe in Jesus, or Hanukkah’s celebration of the rededication of the Holy Temple, or the first fruits of Kwanzaa – I do. I believe in it all. What it comes down to, no matter what you believe, is this time of year means gifts. And family, even if they’re horrible. And friends, if you have any. And, whatever tradition you decide to bring to the table. So, in addition to buying one thing for each child that they really and truly want, the rest is about having fun. Going on an adventure. Experiencing something new. We’re going to roll around in giant hamster balls (as long as it’s not mentally taxing for Madeline to be reminded of hamsters) on the snow and swim in some hot springs and eat Chinese on Christmas Day and enjoy each others’ company. Let’s see THAT get stolen from the car.

And whenever something horrible happens, I do try to balance it with the good: I got a newish car. She’s beautiful. And my daughter went back to school last week, bravely making the decision to not let other turd-balls screw with her mental health. While she still mourns Liz, she’s doing her best to find the joy of the season. My son finished his second round of chemo and is on the upswing to physically getting stronger. Scans will occur the week after Festivus, which takes place on 12/23 for those who are interested, and hopefully we’ll learn that he shows no evidence of disease.

As for those pesky panic attacks, I’m going to embrace them. There’s not a freaking thing I can do about them because my stress level never dips below a full tank. And it’s a good way to get random people to bring me water. I did, however, join a depression club through Children’s Hospital where the 10th punch gets me a month’s supply of Prozac gratis. So I got that going for me.

Actually, I have a lot going for me. I just like to complain. And moreover, I like sharing my complaints with you. Because you love me.

You all truly love me. What would you do without my wicked sense of humor and discussion of old man balls? I bring levity to your life. Admit it.

And that’s a freaking Christmas/Hanukkah/Kwanzaa/Festivus miracle. Shit. I’m pretty sure an angel just got their wings.

Love to ALL of you this glorious, f*cking holiday season.

 

I hit a big freaking wall yesterday. It wasn’t a slight fender-bender. No. It was a full-contact, crash-test-dummy-ejecting fiasco. For half a second as I was flying through the air, I felt a brief embodiment of joy as the last bit of my sanity was stripped away from my soul – which in my mind sounded like velcro being pulled apart – as I embraced the thought that impact was coming soon and would put me out of my misery.

Of course, all this really means is that I cried really hard for a really long time. In fact, I cried so hard that I fell asleep really early, which is why I’m awake and writing this at 3:10 am.

These early morning hours are the hardest. I just lay here thinking of all the things that are not going as planned, which is darn near everything. He’s asleep in his room after making it through another day of being my quietly brave boy. Without making too much noise, I go and check on him while he’s asleep. He can’t protest my making a big deal over him if he’s not aware that I’m doing it. I find that beautiful pulse on his wrist as I gently hold his still hand, willing my heart to beat in time with his. Feeling the connection. Committing to memory. And wondering…

How long?

Being mad with myself for thinking that way even though people are talking that way. Make the most of it, Sarah. Make it magical.

That’s a tremendous amount of pressure. Especially when I’m flying through the air waiting to land in a world where my son doesn’t live. And I’m left with the memory, fearful that my mind won’t remember just how it is. How beautiful. How amazing. How powerful he truly is and what a blessing he is to just about everyone on this planet.

I’m grieving. I feel guilty about that because he’s still here. But I can’t keep up. It’s like I’m at school, taking notes for a test. Wait! I missed that last bit! Can you repeat it? Will it be on the test? What if I forget?

What if I fail?

And opening up my inner-most self here to everyone. Anonymous readers. Most wonderfully supportive. Some anxious to be critical. Others wanting to convince me that “he’ll be in a better place.” Telling me things I don’t want to hear. Like a piece of mail I know contains terrible news and simply refusing to open it in hopes that it will go away.

But these are the dark hours. It won’t last for long. My fit of exhaustion will finally win and give me respite for a while, recharging enough to get through another day.

And somehow finding the strength to make it through.

 

I do spend a lot of time on the computer, so I’m no stranger to the trending sensation of sensationalism. I just saw a headline a few minutes ago that said, “What the mechanic did to this woman’s car left her in tears.” Well, we’re expecting some horrible story about how this evil mechanic left the oil cap off, which caused her engine to blow… but not before she realized that the mechanic had also stolen her Yankee Candle air freshener AND scraped off her bumper sticker advertising the high intelligence level of her child. But this is not the story at all. She was broke, needed her car to get to work, and the mechanic helped her out. They tricked us! We were expecting some downright evil sh*t but got a happy story instead.

What is wrong with us? Why do we respond to horrible things? It seems that there’s a piece of us that wants failure to reign so we can “SMH” (shake my head for those of you still learning today’s popular abbreviations.) Instead of following these misleading headlines, you should simply follow Ben’s page. It’s heartbreaking enough to satisfy all your demented needs. 😉 Oh, stop SMH at me… I am adding a little drama to spice things up. It’s what you crave, right?

If you’re new to our world, you should know that I exist solely on the love of my children, doing yoga, writing, potato chips, and a completely warped sense of humor. Oh, and a handful of meds for a variety of inadequacies I’ve been genetically and emotionally exposed to. If I couldn’t inject humor into this crap hand we’ve been dealt, well, I do believe I would have jumped off something very tall by now.

At some point, you just gotta laugh.

I recently made plans to take Maddy to Los Angeles. One of our conjoined bucket list items was to go to the “Dia de los Muertos” festival at the Hollywood Forever cemetery. We’re both creepy kids and LA has quite a lot of creepy things to do, especially around Halloween. So, since it was my daughter’s fall break, I wanted to do something with – and for – just her. She’s been so patient for the entirety of her life, playing an important – but rarely glamorous – role in being the younger sister of a critically ill kid. She deserved this trip. So, I planned. My dear friend, Melissa, set us up with her MIL, Astrid, who gave us a beautiful place to stay AND a car to use. There would be tickets to attractions so our trip would be jammed with fun stuff to do. All we had to do was get there, and flights worked out to be extremely reasonable. I booked it. Maddy was thrilled and immediately started a countdown calendar for the trip.

Then, a couple of weeks before we were due to leave, we got the news that Ben had relapsed. This would be his fifth fricking time fighting neuroblastoma. As we discussed options with his team, they kept talking about that week – our fall break – as when he’d probably be suffering the fallout from chemo. Sh*t. As we were mulling over the options, Matt and I discussed canceling that trip. I knew it would break Maddy’s heart, but I thought it would be best.

Before I could discuss it with Mad, she went to Ben on her own and said, “Mom and I don’t have to go out of town. We can cancel it if you’d like us to stay here with you.” My eyes welled with tears as I heard her offer up the one thing she had to look forward to in order to care for her brother. Then Ben said, “I’d be disappointed if you didn’t go, Madeline. You deserve this trip.” I had to walk away, mostly because I knew the kids were tired of seeing me cry.

Ben was throwing up the day we left for LA. He had developed a horrible and painful rash all over his body. It was tough to leave, but knew he was in capable hands with his father. While we kept in constant contact with Ben, Mad and I had a ridiculously good time. She repeatedly thanked me throughout the trip, often exclaiming that she was having the best time ever! It was a priceless experience for us, and gave us some much needed time together.

Ben was admitted to the hospital the day before we returned. That last day was challenging to keep our mind on vacation, but I reminded Madeline that Ben wanted her to have a good time. So we did. And when we returned to Denver, our first mission was to rush to Ben’s bedside. The rash was gone and his hair was starting to fall out and have to use a hair system. I felt the familiar tightness in the back of my throat when one of those pesky panic attacks comes to visit. No, the cancer and the sadness of our situation had not disappeared, but the trip had offered me a much needed respite. And that’s ok.

A few have questioned how I could leave Ben at such a time. Don’t worry, I get inappropriate messages from people all the time. Everyone has an opinion on how I should do things, but I’ve realized that my opinion is the only one that matters. So go ahead and judge. I don’t need to make up a headline like “Mother leaves cancer-stricken son behind to frolic in LA.” I needed to give this gift to my daughter. I needed to take this moment for myself. I wouldn’t change it for the world because we had SO MUCH FUN, PLUS we had Ben’s blessing.

So, for those who are SMH at us for trying to make a happy story out of a sad headline, please find another story to follow. I think we’ll be okay without you. But for those who truly love us and are following our story to offer support, this “Mother is grateful to people rallying around cancer-stricken son and family.”

Succinct. To the point. Truthful.

The end.

 

*Contains a swear or two.

Not long ago, I got involved in a small debate on Facebook over the nominees of the Arthur Ashe Courage Award. I generally don’t like to debate much of anything as I’ve always been the kind of kid who could see all sides of an argument as long as they’re well thought out and argued without cutting everyone else to shreds. I guess I’m a lover, not a fighter. And I hate unnecessary conflict.

Anyway, a friend of mine was stating that Caitlyn Jenner should receive this award because of the courage it took for her to come out as a woman. I agree that it took courage, but I’m also skeptical of anything that those affiliated with the Kardashian clan does because they seem to be in it for the attention and reality tv show deals. They appear to be a 100% “drama added for viewing pleasure” type of people. My opinion. Nevertheless, I understood and accepted my friend’s position, but made it known that Lauren Hill had my support because of her battle with terminal brain cancer, yet maintaining her love of basketball and playing until her battle-scarred body refused to let her.

“But what has she done that’s so courageous?” This was the line of questioning that my friend took regarding Lauren Hill. I decided not to say much else other than I know what I know from dealing with my son’s cancer diagnosis and how he faced it with a courage that I’ve never seen before, every single time.

As most of you know, we recently learned that Ben is facing Neuroblastoma for the fifth time. It’s a bit more aggressive than it has been in the past, and it’s in a few more sites than it has been in his last couple of relapses, so we’re freaking terrified. Add in the fact that his treatment team is throwing around phrases like “quality of life” and encouraging us to make “bucket lists” and making the most of our time together, well, those types of statements ratchets up the anxiety a bit more.

After getting off the phone with the information that Ben had relapsed, Matt and I went upstairs to give him the news. Oh yeah, due to financial issues, I’ve moved back in to the house in hopes of alleviating some of the financial burdens. I have to admit, everything is going very smoothly. I believe we’ve both grown up a lot and are giving the extra effort to function as a team – like parents are supposed to. Too bad so many of us forget how to do that, even those who aren’t faced with a child’s life-threatening illness. Regardless, that’s what I told Ben as I held his hands and cried about a fourth relapse, that we will function as a team. A single tear slid down his cheek. He was just as shocked as we were.

I don’t know why we’re so surprised, Ben has chronic disease after all. They told us it would come back. And it did. Yet, it left us feeling like we had been punched harder than the last time we received this news. I guess it’s something you can’t ever get used to. And living in that kind of shadow is pretty fucking brave. At least, it is to me. Add in the fact that he’s been doing this since he was two years old yet still finds the courage to fight every single time… he’s not only brave, he’s the epitome of a warrior.

Such news is always hard to give. After we had our “cuddle puddle” of everyone surrounding Ben and simply holding him, at some point we had to leave him alone to process. His light was on late. I kept creeping upstairs all night to check on him. It seemed he had retreated to his online friends and video games, so he was coping as best as he could.

The following day, he jokingly told his dad that he wanted a closed casket and at the end of the service, “Pop Goes the Weasel” should be played.

The next day, I held him as he cried. He stated, “I’m going to die before I get to do anything with my life.” I didn’t say a word. I just held him as his tears soaked my shirt. I mean, what can you say to that? I can’t tell him no, he won’t die. But how do I encourage him to maintain hope? How do I show him the options he has to fight this monster without scaring the crap out of him? How does he pick up that pen to sign away the next year of his life to chemo, hair loss treatment, mouth sores, vomiting, and the very real possibility that this will be his last battle because his body is getting so tired?

Courage.

I don’t want to get out of bed to face today because tomorrow is going to suck. I want to stay in my dream world where monsters are chasing me through a haunted house instead of waking up to the fact that a real monster is holding my child hostage. Yet he sits with that monster every day, knowing all he can do is stay as strong as possible and maintain small shreds of hope that he’ll survive this.

As I was holding him, sobs wracking his small frame, I kissed his soft hair again and again, knowing that the future weeks will take that beautiful red hair away from me. It will take away his strength. It will probably make him smaller yet through an inability to eat. And they want us to make a list of fun things to do. Hurry up. Have fun now. Because what’s coming isn’t fun. What’s coming might be the end.

Yes, signing that paper as a 14-year-old, taking away what shouldn’t be a privilege – the right to be a kid – shows tremendous courage.

Fucking cancer. I hate you. I hate what you’re doing to my son. And as my tears flowed, dripping into his beautiful red hair, I told my son that I would take his disease from him in a minute. I would gladly pay that ransom and let it destroy me instead. Because I simply don’t have the courage to watch him die.

And he said, “Mom, I simply wouldn’t allow that.”

Nothing subjective about that. That is 100% courage.

 

This has been a most trying week for your good friend, Sarah. (Oh no, there she goes referring to herself in third person again – a sure sign that she’s lost her mind.) We’ve had insurance issues that cannot get resolved, life issues that keep mounting, and, of course, the “usual” rigor of putting Ben through another round grueling therapy meant to save his life. Besides the last issue, which will always take precedence over the other “crap,” the other stuff can simply piss off. For as of this morning, I’ve lost another dear friend to the evil and dreaded cancer.

I met John Enterline 13 years ago while I was working as an HR manager for CorporateOne Federal Credit Union in Columbus, Ohio. It was the last “official job” I held before my two-year-old son was diagnosed with stage IV Neuroblastoma. Despite being in the position for only nine months, my co-workers remain an important part of my family to this day. They came to Ben’s bedside during those first critical weeks. They called, sent emails, provided food, visited, cried with and pledged their undying support to me and my family. It was one of the only places I’ve ever worked that had a true love and respect for their employees. Their support has never wavered – even after Ben’s 11 years of relapse after relapse.

While I cannot think of a single co-worker without anything but loving kindness, John stands out above the rest. I knew him to be a fairly quiet man; a constant observer. He had a kind heart, and we would often chat about boring life stuff in the kitchen each morning as I was making my instant grits. (Don’t judge… I’m 1/2 Southern, which is why I like grits, and 1/2 Northern, which is why they’re allowed to be instant grits.) Regardless, I enjoyed my morning chats with John. We had a love of photography in common, so that was often a point of discussion.

When Ben was diagnosed with cancer, John presented me with a small gift-wrapped box. As he placed it in my hands, he clasped his hands around mine and said “Please give this gift to Ben when he turns 18.” Ben was two years old at the time, and 18 seemed so far away. Tears streamed down my cheeks because I felt it was highly unlikely that my son was going to see his 18th birthday. At least, according to his doctors. I knew that Ben had less than a 20% chance of long-term survival. John knew that, too. And while I was buying what the doctors were telling me – that I would lose my son well before he had the chance to turn 18 – John chose to hold on to hope.

I promised John that I would. I took the small box, gift-wrapped in a shiny, vibrant green foil, and put it away.

Over the years I’ve moved it from place to place, from Ohio to Colorado and wherever else my road has taken me over the last decade. I’ve let Ben hold the package, knowing that he has this box to look forward to opening when he turns 18. I let John know a couple of years ago that Ben was really looking forward to that day, and he said “Awwww, I hope he’s not too excited. The gift really isn’t that big of a deal.” I immediately disagreed and told him that it didn’t matter what was inside. The contents were insignificant. The love surrounding it was the important part and Ben was the sort of kiddo who would fully appreciate that.

Then, my friend John learned he had cancer himself. Shortly after his diagnosis, he reached out to me. He told me that he was in awe of Ben – now more than ever – because John was experiencing first hand the horrors of cancer therapy. He wondered how a child could be subjected to the same harsh therapies that adults were receiving. And the fact that Ben had been in treatment for over 11 years was stunning to him. He told me in a note that “it’s just not fair” and that he was still praying for Ben. Always one to think of others, that friend of mine.

Not too long ago, I received a message from him stating “Ben is my hero!!! You can tell Ben that I’ve been praying for him and he has my love and admiration.” Shortly after receiving this message, my CorporateOne family let me know that he was struggling. Two days ago, my friend told me that he had lost consciousness. His once fidgety movements had gone still. He most likely only had hours left.

I thought hard about John as I was walking with Ben through mid-town Manhattan yesterday. We’ve just finished up the last of this particular study and are now in the stressful moments of awaiting the scanning process, praying that there’s no cancer hiding in my son’s body. I took Ben’s hand and let him know that the friend who had given him that shiny green package so many years ago was getting ready to leave us. He closed his eyes. I have no idea what my child was thinking at that time, but I’m sure he was sending John all the loving energy he could muster.

As we carried on with our journey toward the Ronald McDonald House, I looked toward the East River and saw the most magnificent sunset reflected in a mirrored building. I thought about how much John would have liked that… I bet he would have had his camera at the ready, wanting to capture it and share it with everyone else. I smiled through the heartache, hoping he felt my love surrounding him.

I woke up this morning to a text message stating that John had left us around 6:45 this morning with his nephew by his side. He left behind many adoring friends and family, a collection of stunning photographs he’s taken, kind words to a heart-broken mother begging for her child’s life to be spared…

And a shiny green box filled with hope for my son.

All my love to my CorporateOne Family, John’s family and friends. I’m so sorry for this devastating loss.

A couple of weeks ago, I was coming out of Target and had the privilege of watching an oversized SUV as it ran into the front of my car. I stopped in the middle of the street, my arms outstretched in the universal pose of “what the frick was that?” as the couple exited from their grand vehicle, not giving my poor car another glance. Granted, it was a hit to my bumper and only pushed the car back slightly, but it was still a hit to my car. As they passed by me, oblivious, I asked them if they gave a crap that they just hit my car. The man looked at me and said “it didn’t beep. My car always beeps before it hits something, and it didn’t beep.” I’m sure my facial features twisted incredulously as I asked “okay, you didn’t hear it, but did you feel it?” His companion piped up that she felt it, but he wouldn’t answer.

I was dumbfounded for about two seconds, contemplating how many things this man must hit that he relies simply on auditory tones to alert him to when he’s being a poor driver. I understand that this feature is something manufacturers are installing in newer models, but since I haven’t owned a model later than 2004, my main luxury is a CD player. I’m out of the loop when it comes to super cool options. Regardless, I was overwhelmed by the lack of concern: no beep, no hit. He did walk back over to my car with me to assess if there was any damage. There wasn’t. He apologized. I got in my car and found myself repeating “no beep, no hit,” and cackled with the high pitched bursts of laughter of someone who might be teetering a bit too close to the edge.

When did we become so dulled to our surroundings? We have an app for everything now that alerts as to what’s going on in our world. We can set alarms, find a place to eat, schedule appointments, store loads of information in our phones – the list of what these miracles of technology can do is extensive. Even in NYC, the busiest place I’ve ever experienced, everyone walking down the street is glued to their phones. I wonder when Apple will install an app called “you’re gonna run into that person if you don’t look up from your phone” which will emit a long, obnoxious beep before you crash into another human being.

Everyone in my immediate circle is guilty. We all love our phones. We read, play games, check news, etc. They are awesome! I once forgot my phone at home for an entire day and I felt lost. My life seemed to be empty without my little electronic nugget of support. But what are we losing in translation? By keeping our eyes trained on the little electronic blob that probably causes cancer, we miss out on so much. We’re becoming insensitive. And I think we’re angrier. Sure, we have the whole world electronically at our finger tips, but we’re ignoring life.

While email and blogging and facebook have been instrumental in keeping people updated on Ben, it comes with a certain price. It seems that everyone has an opinion and people feel safe when they’re hiding behind their keyboards. It gives them the ability to say really horrible and hurtful things. Sometimes from a simple misunderstanding, but other times because people can simply be turds. I was recently reading an article about a Texan hiking a technical climb in Colorado. He slipped and fell quite a ways and he died. The comments on the article ranged from “I’m so sorry for his family” (appropriate) to “That’s what a Texan gets when he comes to Colorado.” (Super inappropriate)

Who on earth finds that sort of statement okay to put out there? Now, I have a weird sense of humor, and sometimes my meaning is lost in translation, but a statement like that is simply cruel. It reminds me of a time when I first started blogging and someone posted, “I hope your son dies.” I stared at that comment for a long time, wondering what kind of person would say such a thing. Thankfully, comments like that are few and far between, but they still happen. One dude castigated me after Ben’s MIBG story aired on the news… he was insistent that weed was the answer and I was too ignorant and “scared of weed” to know that I could save my son’s life with marijuana. Now, anyone who knows me well enough knows my stance is in high support of medical marijuana, but it is not the answer for Ben. I know that. His doctors know that. This tool who was so sure of my ignorance doesn’t know that. The internet has created a lot of “self-made experts,” but it hasn’t taught them any freaking manners. And while I take all of their comments with a grain of salt, I have to understand that opening our lives up to the general public like this puts us at risk of running into some big time crazies. I know I need a thicker skin.

But people also need to learn some flipping manners instead of simply waiting for their app to tell them what to do next.

Last week, my beautiful daughter started middle school. I wrote her a letter in hopes of giving her a little extra support during these tumultuous years.

My darling Madeline,

Today is your first day of middle school! What an adventure! I remember my first day of middle school like it was 36 years ago – because it was – and I’ve been trying to forget it ever since.

I couldn’t wait to wear my brand new yellow pants (hey, it was the early 80’s) and sport my super curly hair, thanks to the toxic home perm my mother had given me. Those home perms were very popular back in my day, and while I chose the picture of a young woman with beautiful waves as what I wanted my hair to look like, it turned out something like this:

 

It was my first real lesson in “Don’t try to be something you’re not.” Fortunately, my hair is inept at holding any sort of curl and I was back to myself in no time.

Don’t get me wrong, precious daughter. Middle school is VERY exciting. New teachers (seven of them!), changing classrooms, your own locker, new kids from different schools… it’s completely different from elementary school. The change is an amazing journey and will impact you for the rest of your life. You’ll make friends now that you’ll hopefully have long into your adult years. And the next major change you’ll make will be when you head off to college. I mean, high school is its own special experience, but the next major step will be trying this whole school thing while living on your own. Thankfully, we have a while until that happens, unless you go all Doogie Howser on me this year, open up a can of genius, and head off to university next year.

Regardless, this year will be amazing. And challenging. Because there’s this fun caveat that “the powers that be” like to throw at us during these years called “puberty.” It’s a hellish experience, but totally necessary in order to reach that all important milestone called “adulthood.” Don’t rush this process! Let it simply happen. It’s traumatic enough to let it occur naturally, so trying to force it is a really bad idea! Take your time when it comes to liking boys, wearing makeup, forgetting about your dolls, and withdrawing from your mother. Yes. Especially that last one. You can skip that one all together! I cherish the closeness we have. I know it will change in some ways, but I hope we can sail through these next few years with minimal issues between us.

Understand now that I only have your best interest at heart. I only want wonderful things for you and, as you mature, you’ll find what I think is wonderful and what you think is wonderful will vary greatly. Just know that I have had 36 years of extra time to process the information that you’re just now receiving. And I’m always right. Always.

Always. 🙂

Here are some things that I want you to know:

*Skip the drama. It’s never worth it. *Don’t worry about still enjoying your “American Girl” dolls. Chances are that the girls who publicly shun them still like to play with them in private. *Your body will change when it’s meant to. Just because so-and-so already got their period doesn’t mean there’s anything wrong with you… and you’ll find that once the novelty of that “first time” wears off, you’ll wish you never, ever got it in the first place. I will find you a copy of “Are You There, God? It’s Me, Margaret.” by early next week. This should be required reading for all adolescent girls. *Don’t rush finding a crush. Relationships are tough stuff – even as an adult – so focus on loving who you are first. *Someone will hurt you. It’s inevitable. But all you can do is be the best you can be, learn from it, and move on. *You will hurt someone. Hopefully, it’s not intentional, but it will happen. *Never compromise who you are: embrace that you’re deliciously quirky and accept that you’re sensitive. *Find a tribe who loves you just as you are. Trust me, they’re out there. *Don’t “follow the leader” because, at this age, they usually don’t know where they’re going, either. *Dream big but enjoy the daily grind of getting there. In other words, “enjoy the ride.” *Don’t try to be someone else. YOU ARE PERFECT AS YOU ARE!

I have absolutely adored having the last 11 years to watch you become the amazing person you are. You’ve always been a little ahead of the game because of the brutal reality of your brother’s illness, but I know it’s made you a very special young lady. You have a compassionate heart, which I believe will help you make the right kind of friends. People who will love and support you. It doesn’t mean that people won’t hurt you – and the realization that people you think are your friends can hurt you – is a tough lesson to learn. You already know that life isn’t fair. But, I think you have an amazing grasp on who you are as a person, and this will ultimately serve you well.

Oh, and one more thing: I’ve got your back. No matter what, I love you and am proud of you and think you’re AMAZING! I will embarrass you at times (remember where you get your quirkiness from!) but I will love you ALL THE TIME. You got this! And for the times you think you don’t, remember I’m right here. It will be hard for me to let those wings of yours unfold without trying to dry them off for you, but you can’t soar with me fussing over you all the time. I ask for your patience with me. I’m going through a transition, too.

And with tears in my eyes as I send you off on this new journey, know that I am proud of you. Excited for you. Scared for you, but know that you will succeed. Go, little bird. I’ll be waiting for your return with open arms.

Love,

Mom.

Last week sucked. And since I have nothing nice to say about it, I’ll talk about cats instead, since today is International Cat Day.

For the first half of my life, I considered myself to be a cat person. The first cat I remember having was a big black cat that my Grandma Sarah picked up from a yard sale. Grandma never could turn down a good yard sale, and I’m sure my mom was thrilled that Grandma found such a “bargain” for me. Anyway, I could carry this giant cat in any manner – like a baby, upside down, by the tail… it didn’t seem to care. Apparently, it had given up on life since it had been relegated to the bargain bin at a yard sale, and didn’t have an opinion on how I paid attention to it, as long as I was paying it some sort of attention. Unfortunately, I don’t remember if it was a male or female, and I cannot recall what we called the poor, dejected cat. And I’m not sure if it moved on from our world “naturally” or if it simply ran off to find its inner Qi. Regardless, I loved the cat dearly and considered myself to be a bonafide cat aficionado based on my experience with this cat.

The next cat I remember was a member of what I like to call our “Gone With The Wind” phase. GWTW was my mother’s favorite movie and she honored her fandom with the first in a long series of Siamese cats she named Rhett. Scarlett came soon after. When one would die (usually of Feline Leukemia), we’d replace it with another Siamese GWTW cast member. This was before we learned that feline leukemia was contagious and replacing them was essentially killing them.

So, when we found a stray Siamese wandering around, Mom adopted it and gave him the name “Ashley.” The GWTW character Ashley is probably my least favorite, I always thought of him as weak. But Ashley-the-Cat was a first class a-hole. He didn’t like anyone but my mother. And he especially didn’t appreciate his other “cast mates.” He felt he should be starring in a one-cat show. And on one fateful day, he took his disdain for the world out on me.

We had just come home from school. I was in second grade. I remember I was wearing my favorite yellow t-shirt. My sister, Cassi, was making a sandwich in the kitchen and I was sitting on the floor right next to the kitchen, directly beside an ironing board. My sister was grumbling at me about something… my needing to do chores or something of the sort. I was busy petting my kind Siamese cat, who was sitting next to me on the floor, but since I was listening to my sister, I failed to hear Ashley, perched on the ironing board, growling directly above my head. I noticed the hair on my kind kitty standing on end, probably bracing for the impending fight with Ashley. But since I was focused on what my sister was saying, I didn’t realize my dangerous situation before it was too late.

Ashley pounced to attack, but my face got in the way. He landed on my head with claws out, and, in what seemed like slow-motion torture, shredded me to pieces. I’m sure the whole incident was over in a matter of nanoseconds, but it seemed like a million years of tiny knives shredding my head into julienned strips. When the cat retreated, I sat stunned, my sister still grumbling about something in the kitchen. I stood up and walked to the kitchen door, beginning to cry, which caused my sister to whip around from her sandwich making. The look on her face was sheer horror. And the scream emanating from her assured me of what I already suspected: I was going to die.

I don’t remember the exact order of events, but I know Cassi called my mother at work to ask what to do. Mom worked downtown – over 25 miles away – so she wouldn’t make it home in time before I bled out. Ok, that’s probably a big embellishment, I probably wouldn’t have bled out, but I like to add a little fiction for dramatic purposes. 🙂 Cassi was told to wrap my head in a towel and take me to my neighbor, Jane’s house. Jane was the mother to a whole lot of boys, and dealing with blood was probably one of her specialties.

So, my sister searched for something to wrap my head in, but in her panic, ended up wrapping my head in a blanket. Now, I’m a second grader. And I was super tiny for my age. So, this little stick figure with a blanket wrapped around her head and blood everywhere had to be quite a site. My sister drug me out of the house by my arm and we ran across the yard to Jane’s. Despite growing up in a tiny village, the street we lived on was well traveled. People stopped. And I told them all that I was dying as Cassi drug me across the yard, bloodied blanket trailing behind my tiny frame.

Jane wasn’t impressed with my wounds a poured a bottle of ST-37, which is still sold online today as a “soothing antiseptic solution” (a review I do NOT agree with,) all over my head. By the time I stopped hyperventilating, mom was home and took me to the ER.

Clumps of my hair were missing. A scratch around my right eye was dangerously close to making me a One-Eyed Sarah. The favorite yellow t-shirt? Destroyed. The cat? Retired. Or punted to the Rainbow Bridge. Not sure what happened to Ashley. Except that he’s been reincarnated and has attacked me repeatedly over the years. Yes, I’ve been sent to the ER/hospitalized three times thanks to cat attacks. And when I shaved my head this past March for St. Baldrick’s, I was reminded of the old war wounds I received thanks to that little bastard of a cat.

And this is why I’m now a dog person.

*I don’t think I’ve ever said so, but THANK YOU, sissy, for taking care of me that day. I know you hate when I tell this story, but you did a good job! I love you!

I have a BIG apology to make. The Southwest Airlines counter at Denver International Airport got a giant taste of crazy on Sunday thanks to my multi-car emotional pile-up. Thankfully, there weren’t any casualties, but my insurance rates are definitely going to go up.

Here’s what went down: As many of you know, I’m upset with Memorial Sloan Kettering Hospital. They have been poor at communicating with us about treatment plans and what’s next for Ben. Whenever we’ve seen his doctor, he sticks his head in and says something like “I know we need to chat…” and then we don’t see him for the remainder of the visit. This was to be Ben’s fourth cycle of Hu3F8 with no end in sight and I’ve been anxiously awaiting answers. We were supposed to come to NYC for Ben’s fourth round two weeks ago, but, thanks to the vacation plans of our social worker, it didn’t happen.

I filed that frustration away until a coordinator called to ask us if we’d consider pushing Ben’s therapy out until August because they were overbooked with kids. First of all, that’s very sad to hear that there’s such an influx of neuroblastoma kiddos. It makes me sick. But secondly, they’d already pushed us out because of the scheduling snafu from the week prior, AND, pushing Ben out one more week would be in violation of the study agreement (needs to have these therapies within eight weeks of each other) so I raised a ruckus. I was told that they could “skirt around” that violation if we would consent to moving and I said no. Well, I said some other things, too, but the message I was trying to get across was no. Matt reminded me to “not shoot the messenger,” but since the people in charge weren’t communicating with us, what option did I have? I didn’t shoot her, but I did stomp on her foot a little. Actually, it was more like a forceful tap.

So, we moved forward with making plans to leave last Sunday. Sloan Kettering forwarded information on how to get a free round-trip voucher on Southwest. Hooray! This was awesome news to me. I called the number they gave me to set up use of the one-time-only “green pass.” The person assisting me was amazingly kind and booked us non-stop from Denver to LaGuardia. He told me to pick up the voucher at the front desk when we checked in. Easy Peasy!

I didn’t pack until the night before our trip. This is my usual program, mostly because I despise doing laundry and I’m a hideous procrastinator. Regardless, it helps me focus on packing instead of brooding about treatment. Matt and Madeline dropped us off at the airport Sunday morning and we went inside to check in and get our vouchers.

Ben was already tired (and, I’m sure, anxious about a week of therapy.) But I was in a pretty good mood. The line was atrocious to check in, so I pointed Ben in the direction of some chairs. A nice Southwest agent overheard me talking to Ben and directed me to the front of the massive line. Awesome! Everything was going wonderfully. I was called forward by my “new friend” Sherrin, and said, “we’re here to pick up our green pass for travel.” And she said, “you’re supposed to get those from the hospital.” And I said, “but I live in Denver and the hospital is in New York and all they sent me was this email.” I showed it to her. She wasn’t impressed. She said she couldn’t help me and my entire body tensed as the crazy started to flow. I said, “but your reservations agent told me I’d pick them up here at the counter!” And she said, “Well, I wasn’t on the phone and I can’t be held accountable for what he told you.” The words shot out of my mouth like machine gun ammo, fast and loud. “You. Need. To. Find. Someone. To. Help. Me. NOW!” She gave me “the look” that every customer service agent dealing with someone they’re annoyed with has down pat, which promptly sent me over the edge. Then came the tears. And the story. With hyperventilation. “mysonhasbeenbattlingcancerfor11yearsandwehavetotraveltogethistherapy!” Her face softened a bit and she retreated to get a manager. He was mean, though, and kept shouting at me to show him the email I received. By that time I was in hysterics. One of the other agents was crying, too. She came over to hold my hand, which made her an instant ally. So, I asked her if she could get this guy to stop being a dick to me. Yes, I said those words. And he threw my phone on the counter and said “I don’t have to help you at all.” Then they all went into a secret room in the back for about 20 minutes, the long line of people undoubtedly cursing me under their breath.

Of course, this is a Sunday, and nobody was at the hospital who could help us. I called Matt. Mostly just to vent, because, in all honestly, what could he do? I checked on Ben, who was melting down, too. That made me feel like total crap. He came over and hugged me. I told him that everything would be okay and that we would get it figured out. We just had to go with the flow. Then he said: “I don’t understand why that hospital doesn’t care about me.” He’s never around when we’re on the phone with them so he doesn’t know all the behind the scenes stuff. Yes, he knows when plans change and why they change, but if he feels like they’re not treating him properly, then there’s a huge problem.

Sherrin came out of the back and the manager dude left without giving me a kiss – or throat punch – goodbye. She said “we’ll get you on this flight but you MUST get that voucher from the hospital.” I leapt over the baggage scale and hugged her with all my might. She said “I lost my son in a car accident a few years ago. I saw the terror in your eyes of not being able to get your son what he needs.” I softly repeated how sorry I was as she held me tight. We’re all fighting some sort of battle, my friends. We need to be gentle with one another.

Then a wonderful man with a wheelchair swooped Ben up and whisked us past the horrendous line at security. The drug dog sniffed me briefly but didn’t make a fuss… all I had was oxycodone and a variety of anti-anxiety meds, which, despite being prescribed to Ben, I did think about snagging one or two for myself.

And since then, we’ve had a challenge each day. Small by comparison, but challenges nonetheless. I got the precious vouchers from someone other than our social worker. She blamed someone else for the snafu, who blamed Matt for not letting them know when we were traveling, who called bullsh*t on the whole thing, because they KNEW when we’d be traveling. I think they’re servicing too many children because the ball is getting dropped. A LOT.

So, let’s preserve my mental health by finding a cure for Neuroblastoma sometime soon. Because it is all about me.

And my sincerest, deepest apologies to Southwest Airlines for being a crazy b*tch.